Another Sunday evening

It was a gorgeous day here. Ed spent most of it working outside around the pool, and we finally got our ponds uncovered and the fountains working so our goldfish are now very happy. The pool looks great and I showed Ed how to add the chemicals today (that's usually my job). The water temperature is 86 degrees -- almost warm enough for me to go in! Maybe tomorrow.

I have been somewhat lazy since the radiation treatment on Wednesday, but tonight we went for a walk up our street and down the other side. Doesn't sound like much, but it was pretty far for me. I'm still having balance and gait issues, but I have an evaluation for physical therapy this week, so hopefully I'll start that soon and get them worked out. My steriods are on the last part of the tapering off and should be done on Wednesday, so perhaps that will help. I'll be very happy when the roundness in my face is gone. I look like a blob!

I've been sleeping better and have made it all the way down to a flat pillow, which is how I usually sleep. (In the hospital, I wasn't allowed to tilt my head below 30 degrees. I've been slowly lowering myself ever since.) It's been weird sleeping with my head at an angle, and several nights I had a very difficult time getting comfortable that way. I only have three sleeping positions -- left side, back, right side -- but they work for the most part. One of these days I'm going to have to give up my afternoon nap, which has become a luxurious habit since I've been home, but once I get more active I'm sure I won't even need it. If I have to go back to the office regularly before the boss goes away for the summer, I surely won't get one then!

Now that the treatments and surgery are complete, the next step is to decide with Dr. K what chemo to use. I didn't mention that the day I was discharged, she came by the hospital early in the morning and sat with us for at least 30 minutes, talking a bit about chemo but mostly just chatting. It was a side of her I hadn't seen before, and I must say that I enjoyed it. She said at that time (before we knew when the radiation would take place) that we would meet afterward to come up with a plan. I'm going to notify her office Tuesday that everything is done and get a date on her calendar. I'll let you know when it is. She did say she wanted to do scans again first and I know that they generally wait three weeks after surgery or radiation to start chemo again, so it will still be a couple of weeks before anything would start.

I hope those of you that can are enjoying the long Memorial Day weekend. I look forward to being back in touch more now that I'm feeling better.

Treatment completed

The stereotatic radiosurgery was successfully completed yesterday and my stitches removed. It was a long day -- 5 a.m. to 9 p.m. -- and I have spent most of the day sleeping. Will have a follow up MRI in 8 weeks.

More later. Thanks for continued support and love.

Sunday evening

This week has been full of up and down days. I haven't been able to string two good days together yet. One day I feel energized and try to get around more, and the next I feel like my head is full of cotton balls. Today was a cotton ball day. Doesn't help that it was a cloudy, raw day either. I guess this is to be expected, and I shouldn't be too discouraged, as tomorrow will only mark one week since I came home from the hospital.

Speaking of tomorrow, I believe I will get all the details of my Wednesday appointment. I'll probably have to arrive by 7 a.m., and it's going to be a very long day. The booklet says to expect to spend up to 12 hours at the treatment center. Yay. No concentrating on that yet. I'll give myself another 18 hours or so.

Thanks again to those who have been following up with e-mails. As mentioned, I am slowly trying to get back to people, so if you haven't heard from me directly yet, please be patient. I truly appreciate all the postitive messages you've been sending. It's just going to take a while to get back in the swing of things.

I'm here...sort of

As most of you know, I've been home since Monday afternoon. It's been a period of adjustment for medication timing, sleeping, eating, and just getting around. I'm feeling better each day, but I'm still kind of foggy brained and wobbly on my feet. It's going to take a while to get back in the saddle.

I found out yesterday that they want to do my day of radiation treatment next Wednesday. They will remove the stitches from the surgery and then set up the radiation. The two remaining tumors are the main targets but they will also be radiating the surgery site to prevent recurrance (up to a 30% chance). I'm not looking forward to it and have decided not to really even think about it until Monday.

This is the first time I've been on the computer since the 12th, and I already need a break. I am trying to catch up with many of you, but please be patient. I will call or write as soon as I am able to. Some days, it's just too much too take and/or make phone calls.

Thank you all for your love, support and prayers. Keep them coming!

Back again

My dear friend Lydia G. has offered her e-mail as a contact point for all of you. Since we can't rely on Ed this time to get e-mail updates out (he can't remember how he did it last time) and I don't know when I'll be back online, Lydia will send you an update if you e-mail her for one. Please send an e-mail (not before Thursday afternoon) to jklgraf at aol dot com. I'm spelling it out here so those e-mail address programs can't find it and start spamming her. You know which words to replace with symbols.

Once you send her an e-mail, she will send you a standard update with what she has heard from Ed (or me). How often she has news to share depends on how often one of us contacts her. If you don't hear back from her, it means she has nothing new to share.

Thanks, Lydia, for offering your time to keep people in the loop. I know they will appreciate it as much as we do.

The Day Before

I apologize but I just can't get to all the e-mails I've received from you. I'll try this afternoon, but if you don't hear from me, don't be offended. I know that you won't -- you've all written that I shouldn't answer -- but since you've taken the time to write me, I feel bad about not answering. It's all just so overwhelming at the moment. I keep feeling like I'm going to start crying, but if I do, I know I won't be able to stop myself. So I just tell myself not to start. Crying isn't going to make anything better anyway, although it might relieve some of the tension. I might have to let loose tonight.

Thank you again for all of your support, prayers, thoughts, hugs and love. I know deep in my heart that nothing can go wrong simply because all my peeps have my back. No matter whether you are nearby or far away, I know you will be there with me in spirit, and that means so very much to me. Thank you.

This morning I have a special MRI where they will place markers on my head that look like peppermint lifesavers. I cannot touch them once they have been placed, so I will attempt to cover them with a baseball cap so I don't look like a total lunatic coming back to work afterward.

The nurse expects that my arrival time for tomorrow morning will be 5:45 a.m., as I am currently scheduled as the first surgery (that can always change in an emergency, of course). I'm not looking forward to it, since I've been told by the pre-admission testing nurse that they will have to run an IV line in addition to using my port. I know, it's a really stupid thing to get hung up on, but you know how hard it is to start an IV on me to begin with. Imagine trying while I'm totally scared. I'm surprised that my veins are even pumping blood at that point. I'll let you know how it goes.

The surgery should last 3-4 hours and I will spend the first 24 in the ICU before being moved to a room in the neurology unit. As mentioned, I may not be back on the computer until late next week, so don't panic if you don't see an update. I didn't have time to show Ed how to send out update e-mails again, so you're out of luck there. He's going to be at the hospital most of the time, so it will be difficult to catch him at home. I have an idea about an alternative source for updates. I'll post it here later if I can work it out.

Wish me luck, and I'll be back in touch soon. Love and hugs to you all!

Another update

This will have to be brief as I am just too overwhelmed to spend too much time writing.

I saw the neurosurgeon yesterday and surgery is now scheduled for first thing Thursday morning, May 13. The tumor in my cerebellum has to come out immediately because if it swells, it would cut off the vessel that drains fluid from my brain into my spinal column, backing up the fluid and causing all kinds of problems. Dr. Gutin seemed very confident that this will be a standard, uncomplicated surgery. I will spend the first 24 hours after surgery in the ICU and then be moved to a room in the neurosurgical unit. I will probably be discharged on Sunday or Monday. After that, I will be home for a month. At some point during that month, probably after two or three weeks, I will have one day of radiation to the other two tumors.

This has been a lot to absorb in a very short period of time and I am trying my best to get organized in two days' time. I would greatly appreciate your thoughts and prayers for a successful surgery and an uncomplicated and speedy recovery. I don't know how long it will be before I can get in front of a computer again, so please be patient. It may be the 20th or 21st before I post again.

Thank you all for your good wishes. I'll be in touch as soon as possible.

Another update

Things change by the moment around here. I guess someone is trying to keep me on my toes. At 11:25 p.m. Friday, I received a call from the same doctor I spoke with earlier in the day. She informed me that the neurosurgery department did want a special MRI, but not the one that was going to be performed on Saturday. Therefore, I shouldn't go to Sloan on Saturday at all and someone would get in touch with me on Monday to schedule a different MRI.

One of Dr. Yamada's nurses, Joan, has taken a special interest in me -- I don't know why, but I'm very appreciative. She was out on Thursday and Friday and so didn't know anything about this situation. I called to tease her this morning ("You picked a fine time to leave me, Lucille!") and she had just heard the news from Theresa, the other nurse. I told her about the MRI being cancelled (they didn't know about that) and that I was still waiting to hear from Dr. Gutin's office (the neurosurgeon). She informed me that Dr. Gutin's nurse is her best friend and that she would call her and call me back. A few minutes later she provided me the nurse's name and phone number. The outcome of the call is that I have an appointment to see Dr. Gutin today at 2:15. Because I'm by myself, Joan is going to join me at the appointment so if I miss something, she'll have heard everything.

Dr. Gutin's nurse kept referring to the tumor in the cerebellum as "the big tumor." I asked her if we could refer to it as "the tumor in the cerebellum" instead. That sounds less frightening. I'll find out when the MRI will be scheduled and when surgery will take place. I won't be able to have radiation on the other two tumors until I recover from the surgery, and Joan also informed me that Dr. Yamada is going to be away and the machines are going to be recalibrated and therefore will be out of use sometime soon. I don't know how that will impact the schedule, but we'll see.

On a side note: I just want to clarify that these tumors are leiomyosarcoma metastases. I do not now have brain cancer, which is a different type of cancer. These are cells from my original tumor that traveled to my brain -- like they traveled to my lungs, skull, pelvic bone, clivus, and chest -- and grew. When they send the tumors to pathology, they are classified as LMS tumors, not lung cancer tumors or brain cancer tumors. It's LMS traveling through my body and taking up residence in new places. I just wanted to make sure that no one thinks I'm developing new forms of cancer. It's the same damned one.

So, I should know more by late this afternoon. Look for another update here sometime tomorrow. And thanks, as always, for caring enough to follow along.

Update

I received a call from one of the doctors who works with Dr. Yamada, my radiation oncologist. Dr. Yamada presented my case before the tumor board this morning and the neurosurgery team decided it would be best to do surgery to remove the tumor in the cerebellum (the back of my head) for several reasons: surgery is the gold standard for LMS -- if you can cut it out, you cut it out; the area where this tumor is located is slightly above where the radiation was performed to reach the clivus back in November 2008 and they have some concerns about radiating that area; and the shape and size of the tumor is amenable to surgery.

The other two tumors would receive radiation for several reasons: surgically removing one tumor is fine but operating on three sections of the brain is too much; they are not located near the area on the back of my head that received the larger doses of radiation in November 2008; and they are perfectly suited to targeted radiation. The 90% success rate remains in effect for those two tumors.

Dr. Yamada's office has cancelled the radiation for next Wednesday, although at this time I still need to come back to the city to have a special MRI performed tomorrow. The radiation will be scheduled after the surgery. They are scheduling an appointment for me next week with Dr. Gutin, the head of the neurosurgery department (see http://www.mskcc.org/prg/PRG/bios/317.cfm) to discuss the surgery.

The sizes of the tumors range from 1 to 2 cms (less than half an inch to just over 3/4 of an inch).

That's all I know right now. When I have more information, I'll be back.

Wow!

First, I'd like to thank everyone who contacted me since yesterday afternoon about the brain mets. Your concern and love just amaze me and I am so grateful to have you all in my life.

Second, you people need to get busy with other things. You're obviously spending way too much time monitoring this blog if you read my message as fast as you did. You know I don't post every day, so get outside or something. Check every few days if you want. You're scaring me.

Third, there has been some discussion -- not with anyone who reads this blog -- that I seem to have "given up." I think as readers of this blog, you know that I have not given up. I've had a tough time lately, especially with the eating portion of the program. In case any of you were wondering but were afraid to say it out loud, let me reassure you: I have not thrown in the towel. I have not given up. I may be skinny and I may be out of shape and I may be tired and not as active as I used to be, but I intend to be here for quite some time. It's not going to get any easier at this point -- although it might sometime in the future if another chemo regimen actually shrinks my metastases -- and I may get sicker before I improve, but I'm not finished yet. I set a goal two years ago to make it at least to 50, and I've got almost two full years to reach that point. Once I reach that goal, I'll have to update my figure. In the meantime, I'm going to do the best I can to stand up to whatever new challenges come my way.

I know you're with me, and that gives me a lot of strength and encouragement. Don't give up hope. You never know if there is a miracle just around the corner.

Bad news

I had my brain MRI this morning, and three metastases were found in my brain: one in the cerebellum (the back of the brain), one in the left frontal lobe (the left front side) and one in the left parietal lobe (left upper back side). These are actually in the brain, not in the skull as the others were. Dr. Yamada recommended targeted radiation and has scheduled it for next Wednesday, May 12. I have to come in to the city on Saturday to have a special MRI done.

On Wednesday, I have to arrive at 7 a.m. They will attach a metal halo to my skull using four screws (after they numb the areas, of course) and then attach a contraption to that. They will perform a special CT scan of the three tumors, and then I can eat breakfast and lunch and hang out until about 2 p.m. They will outline the tumors in 3D and determine a path for each radiation treatment. Around 2 p.m., they will begin the treatment, which will take about 20 minutes per tumor. Once the treatment is complete, I'll be finished and can head home.

Dr. Yamada says this treatment has a 90% success rate in killing the tumors and a five percent chance of long-term side effects. My other two choices were surgery or do nothing, the second not really an option in my opinion. We didn't discuss the surgery at all, although I will be speaking with him on Friday and will ask him about it. It would obviously be much more invasive since it requires operating in three different parts of my brain. I'll let you know what he says about the pros and cons.

He e-mailed Dr. K to tell her about the report and his recommendation. We both believe this means I am out of the clinical trial, since these metastases were not on the scans I had in November before the start of the trial. New growth in a new part of the body is a deal-breaker, I'm sure. He said that he's certain she will want to speak with me once she reviews his notes.

So, very disappointing news to say the least. While I have every confidence in Dr. Yamada and this treatment, it is not good news that I am growing new tumors. I don't know what all the options as far as chemo treatments are available to me. I'll have to discuss that with Dr. K, Dr. Windsor (the NJ oncologist), and do some research. I know there have been some new treatments lately that have brought some success to other LMSers.

I wish I could have brought the good news I was planning on, that everything was stable and nothing new was seen. It's been a very difficult day for me so far, and I'm not looking forward to breaking this news to my mother -- especially on Mother's Day weekend. However, I can't not tell her. That's going to be really tough.

So, I would appreciate your prayers, your positive thoughts, or whatever else you want to send my way. Right now I'm feeling pretty low.

In case I'm not back before then: Happy Mother's Day!!

A better day

Yesterday we were called in to chemo at 10:55 -- only 2-1/2 hours after my blood was drawn. A significant difference from last week and a much more pleasant experience. I slept for part of the infusion time, as I have not been feeling well this week. My stomach has been very upset and I've had the dry heaves almost every day. I'm trying to get food in, but it's tough going.

I saw Dr. K yesterday and she admonished me for losing another two pounds over the past two weeks. She instructed me to nibble all day on whatever I can get in my mouth -- cheese and crackers, ice cream, cookies, etc. -- plus to drink Ensure or Boost. I actually have a bottle of Ensure at home in the fridge that I keep forgetting to try. Guess I should do that tonight. In the meantime, she, like the nutritionist, said to eat small meals throughout the day. I have been trying to do that the past two days. Today I'm making better progress, but my stomach is really not interested in anything I'm putting in it. As Lydia G. told me (and Ed has been telling me for weeks), I really just have to tough it out and make myself eat whether it tastes good or not. That's not easy to do, but just by looking in the mirror I can tell I have to do something and do it quickly.

I have my brain MRI tomorrow morning, which I'm not looking forward to. I have my Ativan to calm me down, so I will take that about an hour before the scan starts. I then see the radiation oncologist for my follow up and after that I'll head downstairs to see the nutritionist again. I don't think she's going to be too pleased with me.

I'll report back after my appointments.